upperlimits
01-17-2008, 04:42 PM
I have a rash on the sides of 2 of my fingers on both hands. It starts off itching then i get little blisters that break open due to skin itching so bad. I have cracked skin aroung this area and rough skin.
I also have High ANA levels with positive Jo 1 antibodies, possible dermatomyositis or ILD (Lung Disease)? Any one know if this rash sounds like either one of these. I also have shortness of breath and muscle weakness. Any help would be great!!
Thanks! :)
I also have High ANA levels with positive Jo 1 antibodies, possible dermatomyositis or ILD (Lung Disease)? Any one know if this rash sounds like either one of these. I also have shortness of breath and muscle weakness. Any help would be great!!
Thanks! :)
Sponsor
andrea234
01-25-2008, 08:32 PM
HI,
Sounds like the typical skin presentation of the dermatomyositis. I have both the DM and lung disease (NSIP). My fingers (usually just the index finger of both hands, would get so bad I had to wear about three bandaids on each finger...to help them heal..and also to cover them up cause it was so distracting to others. Im assuming you've seen a Rheumatologist and Pulmologist since you know what your bloodwork says...but they havent diagnosed you?? What is your CK level?? are you having trouble walking?? Ive been dealing with this for about 7 years now..so I have lots of experience with this..and am willing to give all the info I have :) take care.
Andrea
Sounds like the typical skin presentation of the dermatomyositis. I have both the DM and lung disease (NSIP). My fingers (usually just the index finger of both hands, would get so bad I had to wear about three bandaids on each finger...to help them heal..and also to cover them up cause it was so distracting to others. Im assuming you've seen a Rheumatologist and Pulmologist since you know what your bloodwork says...but they havent diagnosed you?? What is your CK level?? are you having trouble walking?? Ive been dealing with this for about 7 years now..so I have lots of experience with this..and am willing to give all the info I have :) take care.
Andrea
upperlimits
01-26-2008, 03:06 PM
They have never checked my Ck levels. They thought i had Lupus due to the high ANA's Most of the blood work came back negative for LUpus i did not have enough clinical signs of Lupus to DX me with it. She did say that i could develop it in the future. And that was it. Can you tell me about this Lung disease. The Dr. did not explain what it is and symptoms. She said come back in 3 months and we will recheck. In the mean time i have been Dx with Hashimotos thyroiditis. Do you have any other AI diseases? I went to a Derm Dr and she said i had exzma(sp?). But the meds she gave me did not work on the itching ect. It was like it had to run its corse. I now have a red pin dot rash all over my upper arms that gets worse in the heat but never goes away. Could this also be a part of it?
Thanks for the reply. I REALLY appreciate it.
one more thing. The Rheumatologist said i was positive for Anti Synthetase Disease. Is that what you have?
Thanks for the reply. I REALLY appreciate it.
one more thing. The Rheumatologist said i was positive for Anti Synthetase Disease. Is that what you have?
dink3
01-26-2008, 09:40 PM
Hello, I Wish That I Would Of Saw Many Doctors In The Beginning Instead Of One Who Tells Me That All Of My Test Are Negative , If I Were You I Would Go See A Rheumatology Doctor And Have Him Test Your Cpk Levels, And Yes There Are More Test But, Its Better To Know Then Not To Know, But,i Am Doing Ok Now, So If You Need To Ask Questions Ask Away.
dink3
01-26-2008, 09:47 PM
Hello, I Have Read Your Comments And I Would Like To Know More About Your Illness, I Too Have The Same Illness And Have Had It Since 2003, I Would Like To Know How You Found Out That You Have Lung Disease? What Procedure Did They Do To Find Out.
dink3
01-26-2008, 09:53 PM
:confused:I HAVE DERMATOMYOSITIS AND WOULD LIKE TO KNOW IF ANYONE ELSE IN THE WORLD HAS IT, AND WOULD LIKE TO SHARE INFORMATION WITH ME.
andrea234
01-27-2008, 09:21 PM
Hi again,
mine is a very long drawnout story but I'll try and muttle through it, I know how much hearing others experiences helps.
It all started out with stress...yes, stress. I had a very fast very stressful divorce ...and well after the divorce I ended up in the hospital two weeks after leaving the state (where my ex and I lived). I went into the hospital to be treated for Ulcerative Colitis. I was septic and literally almost preforated. So after getting that under control with the meds for that...I remarried and soon after got pregnant....all went pretty well with that ...the UC even improved. ( Oh I forgot to mention...one other medical issue I had ..and suspect I had for years was Fibromyalgia...but it wasnt too terrible) So back to the drama. I then got pregnant again when my little one was 5 months. Twins this time. When pregnant with the twins...as you can imagine I gain some weight...only 23lbs..but I had yet to lose weight from before..so I would say Im about 210lbs. and I start really feeling out of breath...but I assume its cause Im so fat and pregnant with twins. I slept with the window open just to be able to breathe..it was winter time, going upstairs was exhausting! even bathing was tiring. So I have the twins...feel a bit better..but still have a heavy feeling in the chest..then when the boys are about 5 months I cant lift them anymore..my forearms are just so weak. The doctor appts. start! I go to a rheum. and he says I have rheumatoid arthritis...I then see a pulmotologist...have x-rays..pft's (pulmonary function tests) CTs.. broncoli-wash...and eventually have a biopsy of my lung and am told I have an ILD which falls into the NSIP catagory (Non-specific interstitial pnemonia (sp) ) so I start meds for all that. So at that point I have Ulcerative Colitis, Fibromyalgia, Rhem. arthritis, and Interstitial Lung Disease. All of which are connective tissue diseases...its common to have more than one but unusual to have so many ( so Ive been told by so many docs ) Im very well known at Walter Reed. LOL. So fast forward a year or so and I wake up with my hands ( in between my fingers on both hands) on fire..I had blisters and am in so much pain...I had never had ezcema in my life before..ever. Thats what it was...after that inital breakout Ive never gotten it again. I see the doc for that..and am give cream..soon after my fingers start cracking ( machanics hands ) and I am so sore ..everywhere...my legs are sore..my neck..my arms..my toes even. I go back to the doc..and I can barely walk ( in fact ..walking in the hospital an 80 year old man passes me up ) I was a sad sight. After lots of vials of blood... my CPK level was extremely high...something like 3000 or higher..I dont remember really...normal is something lik 120 or 150 . My ESR was high..I had Jo1 . So finally I was told I had DERMATOMYOSITIS...after a year or so on the Enbrel 2 shots a week and 100mg of Imuran..I have another flare and my doc ups the meds to 3 shots of Enbrel and 150mgs. of Imuran. Also, I have been one of those who needs chemo. once a year to 'reset' my T-cells. So to make a very long story a bit longer... I presented first (showed initially) with all the secondary connective tissue diseases (UC, Fibro,Arthritis,ILD) thats why I was so confusing to all the docs. and then finally...my main disease is the DM...the meds that I take for that..luckily takes care of the others. My suggestion to yall is to get the right docs. and get the right bloodwork done. If you would like to email me directly feel free. I hope Im allowed to give it on here...its : fiveboysmommy@hotmail.com
take care... andrea
mine is a very long drawnout story but I'll try and muttle through it, I know how much hearing others experiences helps.
It all started out with stress...yes, stress. I had a very fast very stressful divorce ...and well after the divorce I ended up in the hospital two weeks after leaving the state (where my ex and I lived). I went into the hospital to be treated for Ulcerative Colitis. I was septic and literally almost preforated. So after getting that under control with the meds for that...I remarried and soon after got pregnant....all went pretty well with that ...the UC even improved. ( Oh I forgot to mention...one other medical issue I had ..and suspect I had for years was Fibromyalgia...but it wasnt too terrible) So back to the drama. I then got pregnant again when my little one was 5 months. Twins this time. When pregnant with the twins...as you can imagine I gain some weight...only 23lbs..but I had yet to lose weight from before..so I would say Im about 210lbs. and I start really feeling out of breath...but I assume its cause Im so fat and pregnant with twins. I slept with the window open just to be able to breathe..it was winter time, going upstairs was exhausting! even bathing was tiring. So I have the twins...feel a bit better..but still have a heavy feeling in the chest..then when the boys are about 5 months I cant lift them anymore..my forearms are just so weak. The doctor appts. start! I go to a rheum. and he says I have rheumatoid arthritis...I then see a pulmotologist...have x-rays..pft's (pulmonary function tests) CTs.. broncoli-wash...and eventually have a biopsy of my lung and am told I have an ILD which falls into the NSIP catagory (Non-specific interstitial pnemonia (sp) ) so I start meds for all that. So at that point I have Ulcerative Colitis, Fibromyalgia, Rhem. arthritis, and Interstitial Lung Disease. All of which are connective tissue diseases...its common to have more than one but unusual to have so many ( so Ive been told by so many docs ) Im very well known at Walter Reed. LOL. So fast forward a year or so and I wake up with my hands ( in between my fingers on both hands) on fire..I had blisters and am in so much pain...I had never had ezcema in my life before..ever. Thats what it was...after that inital breakout Ive never gotten it again. I see the doc for that..and am give cream..soon after my fingers start cracking ( machanics hands ) and I am so sore ..everywhere...my legs are sore..my neck..my arms..my toes even. I go back to the doc..and I can barely walk ( in fact ..walking in the hospital an 80 year old man passes me up ) I was a sad sight. After lots of vials of blood... my CPK level was extremely high...something like 3000 or higher..I dont remember really...normal is something lik 120 or 150 . My ESR was high..I had Jo1 . So finally I was told I had DERMATOMYOSITIS...after a year or so on the Enbrel 2 shots a week and 100mg of Imuran..I have another flare and my doc ups the meds to 3 shots of Enbrel and 150mgs. of Imuran. Also, I have been one of those who needs chemo. once a year to 'reset' my T-cells. So to make a very long story a bit longer... I presented first (showed initially) with all the secondary connective tissue diseases (UC, Fibro,Arthritis,ILD) thats why I was so confusing to all the docs. and then finally...my main disease is the DM...the meds that I take for that..luckily takes care of the others. My suggestion to yall is to get the right docs. and get the right bloodwork done. If you would like to email me directly feel free. I hope Im allowed to give it on here...its : fiveboysmommy@hotmail.com
take care... andrea
matilda62
03-28-2008, 04:21 PM
I was diagnosed with this disease about 8 months ago. It took 3 months to find out what I had. I currently see a dermatologist and a rheuumatologist. I'm taking Plaquenil and CellCept but haven't seen much improvement.
I have a lot of skin issues and would love to find out what others do for this disease.
I have a lot of skin issues and would love to find out what others do for this disease.
matilda62
03-29-2008, 10:29 AM
I would like to share information with you - seems like no one has ever heard of this disease and it's hard to discuss it with anyone.
hankster1949
03-30-2008, 04:54 PM
I have the classic dermatomyositis rash. Had it for about 4 months now. All my bloodwork has come back normal. Have no muscle aches or pains at all. Had a full CT scan which showed a nodule on my adrenal gland. Going for an MRI of the area tomorrow. My doc tells me nodule on the adrenal gland is very common and will more than likely be nothing. I am not being treated at all for the rash which upsets me to some degree because I am concerned that this condition will be advancing quietly while nothing is done. Will be seeing a specialist on this in NYC next month. The rash hasn't gotten any better (with corticosteroid creams) but it hasn't gotten any worse. As I said, I feel fine but I feel that "cloud" hanging over my head. I could use any input anyone can provide. Thanks.
duncan1
05-16-2008, 05:06 AM
I developed Groton's papules, the classic skin symptoms of dermatomyositis, one year after being infected with Lyme Disease, via a tick bite in 1990. My Lyme Disease went untreated for 15 years, but after I began antibiotic treatment the purplish rash cleared up, and now presents as a kind of dermatitis. I would suggest that anyone who is diagnosed with dermatomyositis should be given a work up for Lyme Disease, and should be given 6 months of minocycline, even if the results are negative for Lyme.